Getting results of heart valve disease screening

People who take part in screening are told on the day whether or not there is anything wrong, and they also get a letter later on with more detail. Most people will be reassured that they do not have any heart valve problems.

Susie has retired from her job as a packer in a food factory. She is married with three grown-up children. Ethnic background/nationality' White British.

And did they tell you the results on the spot, when you had the screening?

Yes, they did. She said, “I’m pleased to tell you”, she said, “Everything is fine.” And I was just like walking on air, you know, and I came home and I said to my husband about it and he said, “That’s brilliant news”, he said, and it really was. So, you know, no problems.

Had you been worried, before you went, thinking, “Oh, what if there is something?” Or did it not, did you expect the results to be okay?

Yes, I did expect them to be okay, you know, because I sort of - all right, fair enough, we all get tired at our age, but I didn’t have any chest pains or breathing problems or anything like that. So I think everything was, you know, okay, so.

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Age at interview:

69

Sex:

Female

Background:

Carolyn is married with two grown-up children. She is retired, and used to work as an optician's receptionist. Ethnic background/nationality' White English.

So getting the results, what did she say to you when she’d finished doing the screening?

Oh, she said, “Everything all clear. Nothing to worry about, but you’ll get a printed letter in due course”, which I probably have thrown away, [laughter] because everything was all right, yes.

Can you remember much about that letter?

Not really, only that it reinforced the fact that there was no problem.

How did you feel when she told you that?

Completely unsurprised, because I didn’t think there was a problem, but it was reassuring to know that there was nothing that I hadn’t realised could be a problem. Because I’d, you know, symptoms that people say, oh, they’re breathless or they can’t do this or they can’t do that, the only limitations I have are by arthritis, not by what I assume to be a heart problem.

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Age at interview:

71

Sex:

Male

Background:

Peg and Roy are married and are both retired. Roy used to be a motor technician and Peg was a benefits manager. Ethnic background/nationality' White British.

And how did you feel, Roy, when you got the results, when she told you she could see nothing?

Roy' Well, I mean, you know, it was a relief, really. I mean, when you have something like that you never know, they could come up with something, especially when you’re knocking on a bit. I mean, you just don’t know, do you really? And that was it, really.

Was it something you’d worried about going into it or?

Roy' No.

No.

Roy' No.

Peg' He doesn’t worry about anything.

Roy' No good worrying about it.

You’re not a worrier [laughs].

Roy' [Laughs] no. She does it all for me.

[Laughs].

Roy' No, but, you know, I mean it’s no good worrying about things. It doesn’t – that won’t do any good to anybody.

Carolyn and Susie were both expecting normal results because they have never had any symptoms which might suggest a heart problem. However, the heart valve screening programme is designed to pick up people before they develop symptoms. Some people who thought they were fit and healthy were surprised to discover they had a valve problem.

Ursula is retired from her job as a vacuum operator with a car component manufacturing company. She is widowed with one adult daughter.

Well, a few weeks ago, or a few months ago, I received a communication asking me if I were interested in a program about monitoring. And I thought it might be good idea. I had no idea I might need help, or anything was wrong. But in spite of everything I thought, “It can’t do any harm. It may do some good.” So an appointment was made and I went to this.

The nurse did the necessary…

Screening?

She did the test, and there she told me then that I seemed to have a slight problem. There appears to be a tear in a valve, in a heart valve. I had not been aware of any problem before, but this has left me rather wondering how serious it might be, or it might become. So when I’ve been asked, when I was asked to, if I would be prepared to take this further I’m quite happy to do so, if it helps. It may not help me, but it could possibly help in the research. So from now on I’m quite happy to help if I can.

When you got the letter asking you to go for screening, did you have to think very hard about whether you wanted to do it?

No, not at all. No, I’m quite happy to help.

Right. And were you thinking at the time that there might be any benefit in it for you, or were you mainly thinking, “Oh well, I’ll help somebody’s research”?

Precisely, it’s my idea. And I thought, “Well I’m now 82. It may help somebody else.”

So you weren’t expecting anything to be wrong?

No, I wasn’t. I wasn’t, I was totally unaware that anything could be wrong. I always felt quite fit and well. Although I had experienced slight out of breath and tiredness occasionally, but considering my age I accepted it.

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Age at interview:

71

Sex:

Male

Background:

Brian is a retired college porter. He is married with 2 adult sons. Ethnic background/nationality' White English.

When you were told that you had this leaky valve, what were your feelings at that point?

Well, at that point I went to the scan thinking that I had nothing at all wrong with me, because previously, only within months before, they did this once before, I had a chest x-ray and I’d also had a scan, you know, whatever they call it [laughs].

An ECG or something?

It wasn’t an ECG, but it was, they put you on camera - well, it’s similar to a scan, I suppose.

Right.

A camera and a screen and that. Because at one time I was getting - I don’t know why it was happening - but I could go out and have a meal, and all of a sudden I would get cramps under the ribcage, and I used to have to get up and walk away to get it to move. And I went to the doctor’s about it, and he couldn’t find any reason for it at all, and he sent me for a chest x-ray and also this scan, and it still come back that there was nothing wrong. So I was surprised when they turned round and said I’d got a leaky valve, you know, being as I’d already been for a chest x-ray and a scan previous.

Was it frightening?

It wasn’t frightening, but it was, you feel as if you’re concerned about it, you know. It don’t make you feel as if you don’t just ignore it or whatever. You know, you’ve got it in the back of your mind that there is something there.

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Age at interview:

78

Sex:

Male

Background:

Pamela and Anthony are married and have 2 adult children. Anthony used to be a design engineer and Pamela worked in accounts for the NHS. Since retiring they have been running their own catering business together. Ethnic background/nationality' White English.

So moving onto what she told you when she’d scanned you both, tell me what she told you and how you felt about it.

Pamela' Well, she just said that there was some sort of narrowing of a thing, but it was normal, you know, in view of age, and she said, “You might be called to do something else but, you know, don’t worry about anything. You’ll be alright.” So we came out of there and didn’t worry about it at all, did we?

Anthony' No. Well, in my case, of course, the valve occasionally doesn’t sort of seal properly. I think that’s what she was saying. It doesn’t close properly. And she said did I feel anything? And I said “Well no, I’ve never been conscious of anything at all.” I think since I’ve had it done I’ve sort of thought about it a bit more, but I still haven’t noticed anything. I can still run up and down the path if I want to and things like this.

Pamela' Yes.

Anthony' It doesn’t appear to have done anything, you know, being conscious of it hasn’t affected me in any way.

And what did she say to you about whether you’d need a follow-up appointment?

Anthony' Well, what she said was that the valve, not that it wouldn’t affect me, she didn’t, you know - it wasn’t serious. It was a sort of age thing and, you know, and as you said, they may ask me to do various other things, which I said I would be quite happy to do, you know, quite happy with that.

Occasionally people said they had some reason to think something might be wrong, so their results did not come as such a surprise.

Lech is a retired NHS salary and wages officer, originally from Poland. He has lived in Africa too, but has been in the UK over 30 years. He is separated and lives on his own. Ethnic Background/nationality' White Polish.

I didn’t know, honestly. I didn’t know I have a problem. I know something is wrong, because I have twice this pain when I was walking fast, and my cousin straight away say, “This is the heart. You’d better go and see a doctor.” Then but still I didn’t know I have a leakage, you see. I thought maybe, like before, I have angina, you see? But I am still on these tablets, you see, now. How you call it?

Statins? Are you?

Statins, yeah.

Ah, right. Is that, how long have you been on statins? A long time?

Oh, on statins, I am now about two, three - two years, I think.

Okay.

Not long, really, not very long.

Have you been taking anything else since the valve problem was discovered.

No.

Or not? No, okay.

No. Still I am taking one, one every evening before I go to bed.

Were you surprised that they found something?

Yes and no, because the doctor was a very nice one, really, and she was telling me what she’s doing and this, and she told me then. You know, I was expecting there is something wrong, but I didn’t know what, to be honest.

And how did you feel when they told you there was this thing wrong?

To be honest, I wasn’t worried much. That is one thing. And second, if there is, today’s medicine is so advanced that even if I would need something then they will give me tablets or even operation, you know, if I will need. Anyhow, still I am not a youngster and a lot of my friends - men, women - gone already.

So is there a sort of feeling of reassurance, almost, having found something, that now you’re being followed up?

Then I will know. Then if something is, I will have pain, this and that, then I will not say, “Ah, tomorrow I will go.” I’ll go today, straight away [laughs].

Okay, so yes, it’s made you more aware.

Oh, yes. Definitely.

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Age at interview:

68

Sex:

Male

Background:

Cathy and Fraser are married with two grown-up children. Fraser is a retired scientist and Cathy is a retired teacher. Ethnic background/nationality' White British.

Do you think you were both expecting everything to be normal?

Cathy' I wasn’t sure. I’ve had the odd sort of twinge and things like that. And you sort of think, “Oh, that’s quite normal. It’s probably wind.” But because I’m getting older, and I suppose there’s something that rattles around in the back of the mind, I thought I was quite happy to have this check done. Mm. I mean, you know, I’m sure people do get twinges. But I haven’t had them before. So.

So when she said she could see something and showed you the dark spot, you weren’t that surprised?

Cathy' I think it reinforced the fact that I was aware of the twinges and thinking, “I wonder if it is wind?” [Laughs]. But that’s all. I mean I hadn’t mentioned it to Fraser.

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Age at interview:

84

Sex:

Female

Background:

Rene is a retired typist. She is widowed and has three grown-up children. Ethnic background' White British.

And then did she tell you your results that day?

She said there was no problems much. She said that I knew that I had the – I’ve forgotten the name of the valve.

Was it the aorta?

The, not the aorta, it was the other one that I’ve known for years, that [my doctor] found that...

The mitral?

The mitral valve was a slight leak, not anything serious. And she said the aorta, there was a little bit of stickiness there or something. But she said, “There’s nothing to worry about”. I said, “Will I be able to go to my 90th party?” [laughs].

I’m sure she said yes [laughs].

She did. She said, “I think you’ve got a pretty good chance”.

And when she told you that you had the problem with the aorta valve, did it worry you?

No.

No?

No. No, 84, you just, you count your blessings [laughs]. Each day is a bonus.

OK. So she told you about this problem...

She was very gentle the way she said it. She said, “There is a slight thing,” she said, “There’s nothing to worry about.”

And did you find that reassuring that she was telling you...

Oh yes...

.. it’s nothing to worry about?

Yes. She was very reassuring. Wonderful, couldn’t have been nicer.

And so now that you know that you have that problem how do you feel?

I’ve just accepted it. Because quite honestly I can’t do what I’m used to but as my daughter reminded me this morning, “Mother, you are 84.” [Laughs] And that I’ve got eight grandchildren that always want, all want me to do things with them. They always say, “Come on, Nan, you can do it.” [Laughs].

As several people pointed out, mild heart valve disease is common amongst older people. If a heart valve disease is discovered during screening, it is most likely to be something minor which does not need further treatment and which people do not need to worry about.

Chris is a retired book keeper. He is married and has five children aged between 23 and 44 years old. Ethnic background/nationality' British.

And what about the person who did the screening?

Explained what the purpose was. And made me feel at rest and it was all explained and no problem at all really. I just did what I was asked.

And then were you given the results on the day?

Yes, I was told, well I was told I had a slight leak in one of my valves, yes, but nothing to worry about.

And how did you feel when you were given that diagnosis?

All right, yes. I’m a pretty healthy person anyway. So there was nothing serious there, it was just a minor leak, which really can be ignored.

And obviously the person on the day told you it was nothing to worry about?

Yes.

And I mean did you believe them or did you feel that you wanted further confirmation?

No I believed them, yes.

Okay.

But I was told then they’d like me to go to the [local hospital] for a further examination.

And when you initially signed up to do this screening, did you suspect there was anything wrong?

No.

Okay and were you surprised then when you were told there was something?

Well given that I was 70 or approaching 70, no not really. I mean your body wears out after a time.

So you sort of expect things to…?

Well, well maybe, maybe not, you know. I mean I don’t have any physical signs that I’ve got anything wrong with me in that way. I live a fairly, well I lead an active life. So, I play golf three times a week and go walking. So I’ve never had any problems about breathlessness or anything like that.

Even so, people sometimes felt a bit anxious. Hugh already has a condition called Barrett’s Oesophagus, which gives him an increased risk of cancer of the oesophagus (gullet), and he says ‘that started making me think, “Oh, you’re quite vulnerable”.’ Then when he found out he had a heart valve problem he couldn’t help but worry about it, especially as there is a family history of heart problems.

Hugh is a painter and decorator. He is married with 3 grown-up children. Ethnic background/nationality' White British.

I think you said to me you were you were able to see the picture on the screen.

Oh, I did that, yeah, after. She said, “I will be able to show you. Just let me carry on”, and then she put the computer in front of me and I saw everything in detail. And she went through all the different, “There’s the big one, there’s the--” and so on. I come home all excited [laughs] saying, “You’d better look after me. I’ve got a couple of leaks.”

[Laughs] And at what point did she tell you that she could see leaky valves? What it whilst she was doing it or was it afterwards?

That was--

Do you remember?

That was afterwards.

Ah ha.

Yeah.

And what--

When she was going through, you know, sort of, but she reiterated, kept saying, “There’s no problem. It is a thing with age.” So hopefully she’s right.

Yeah, and what were your thoughts when she said that to you and showed you the picture?

You know, with her saying, “Well, it’s, it happens with age” and all that, and I’m, what, sixty-nine, so I thought it was par for the course, as you might say.

But you did mention earlier that you found it quite frightening as well.

Oh, yeah. Well, you know, it’s when I started to think of my cousins and uncles and all that that have had heart, so that’s always in the background, I suppose, the heart. Although my daughter might argue the fact that stroke is worse than heart, but [laughs] for me within the family, being that there’s so many males in the family that have had heart problems - another uncle as well has had sort of like three, I think. So you start to think, could it be your turn? One died when he was fifty-four. So you start to think back, then, thinking, “Well, is it all in the family?”

Yeah.

With the other Barrett’s oesophagus I’ve got, it’s I know there’s a couple of nephews that have got it as well. So you start to tend to think it runs in, don’t you?

Were you anxious before you went? Had you been thinking, “Oh, gosh, I wonder if they’ll find something?” Or--

Not really, because I’ve always, I played a lot of football up until I was about forty, and I’ve always considered myself fairly fit, and I’ve always worked, and sometimes I was working seven days a week for years. And I still go loads, still do work now, still can go on long walks and feel okay. So I suppose I’m like everybody, we think we’re pretty immune from the [laughs] the big bang, as they say. So no, I didn’t worry. Maybe if I’d - I’ve often wondered how people who’ve had a heart attack, how they cope with life after. Do they push themselves, or? Like yesterday I worked really a sort of ten-hour day, because the people are away and I’m trying to get the job done before they come back, and I was told off when I got back here that I should be doing it less, gentle, but I feel I’m okay.

Ursula was told on the day it was not serious, but this was not enough to reassure her.

Ursula is retired from her job as a vacuum operator with a car component manufacturing company. She is widowed with one adult daughter.

Is there any family history of heart problems?

No, none at all.

No. And you don’t have high blood pressure or anything as …

No, no …

...far as you know?

...it’s never been diagnosed as high blood pressure. Always quite normal.

So when she said to you that there was something, was that a bit of a shock?

Well, of course it did make me worry, especially since I don’t really know how serious it is now, or how serious it could be in time to come. I’m not quite sure what I can or cannot do. I’m a very active person and one who likes to know beforehand.

So for you there are some questions here about what this really means. Did you get any information from them about what heart valve disease is?

No, I didn’t, and I didn’t ask either. I haven’t been back to the surgery since. And I did receive a, the notice officially of what was found at the time, but I haven’t taken any further steps.

Would you have liked to have been given something to take away with you, some information?

I might have been happier had I been told what, how serious it is or how unimportant it is, because to me it seemed, although it was found, but nobody gave me any indication as to what I can or cannot do, avoid any strenuous exercise or work or anything like that. But, as I say, at the moment I’m just waiting to see what happens.

And you’re not sure yet whether they’re going to ask you to go back for another appointment?

No, up till now nobody has bothered, so I’m just wondering. I feel rather, a bit let down.

Although Ursula remembered getting the results confirmed in a letter, it did not give her the extra information she would have liked. People were generally pleased to get the letter – for example Peg said ‘That was quite good. It explained a lot of things.’ But there were mixed views about how easy it was to understand and whether more (or different) information would have been helpful.

Pamela and Anthony are married and have 2 adult children. Anthony used to be a design engineer and Pamela worked in accounts for the NHS. Since retiring they have been running their own catering business together. Ethnic background/nationality' White English.

Pamela' She just said there was something but it was nothing to worry about, and then we had the letter with the thing and we read it and put it in the drawer and didn’t worry about it.

Anthony' Yes, yes. That’s the same in my case as well. She just said there was something and I said, “Oh yes”.

Pamela' You see I think you’ve got to realise that when you’re 78 and 80, you’re bound to have something wrong with you, because otherwise it’d be a miracle, wouldn’t it? [Laughter].

Yes. So you just take it on the chin, in a way.

Pamela' Yes.

Anthony' Yes

Yes. What did you think about that letter when that came?

Pamela' What, with all the details?

Yes.

Pamela' I thought it was very good how they’d gone to all the trouble of putting all that out, you know, and sending it all out in full.

Uh-huh.

Pamela' Wasn’t it?

Anthony' Yes.

Pamela' I mean, not that we understood all the exact things, but at least it was in the open. It’s much better than being, you know, people wouldn’t tell you anything. If they didn’t tell you anything you might start to think all sorts of things. But if something comes in the open I don’t think you’ve got to worry about it anymore.

Anthony' I think we’ve grown up in a generation of people when doctors didn’t tell you what was wrong with you. And I think…

Pamela' Which was bad.

Anthony'...we’ve now over the years become more used to the fact that doctors do tell you what’s going on, truthfully, and don’t try and gloss things over. And I think this is you know, I feel quite happy about it, I’m not worried about it in any way.

Do you think there’s anything they could do to improve that letter, because I know it’s quite complex isn’t it with a lot of figures…

Pamela' No I thought it was fine, we both thought, didn’t we?

Anthony' Yes.

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Age at interview:

78

Sex:

Male

Background:

Lech is a retired NHS salary and wages officer, originally from Poland. He has lived in Africa too, but has been in the UK over 30 years. He is separated and lives on his own. Ethnic Background/nationality' White Polish.

Is there anything you’d like to suggest to them about how that letter could be improved?

Improve only this, that we can understand, you know, what is written there because if that is written LVOT diam 2.1 CM, I don’t know what that means, and all this.

But anyhow, as I say, if somebody wants to know we’ll try to find. I didn’t go even to my GP to ask this. I just asked my niece’s son and he told me everything he knows about it.

So the only thing really would be the information that comes.

Yeah, the - I am waiting, you know. I am not really in a hurry actually. She say she will try to make appointment for me. I know that hospitals these days are very, very busy.

And the written information that you get. That could be improved a bit.

This can be, actually, because at least a few lines to say - not this letter sent, numbers and this, because this is black magic for me and, but still everybody who knows, wants to know, will go to, I could go to GP and say, “Can you tell me what is this?” Why to bother him if somebody else can tell me? He is busy enough.

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Age at interview:

77

Sex:

Male

Background:

Norman is a retired market researcher. He is married with three grown-up children. Ethnic background' White British.

But I must say looking at the details that I got, I mean [laughs] it’s very, very detailed. [Looking at letter] And to be perfectly honest I haven’t the remotest idea what the numbers mean.

Do you think it might have been helpful to have a, a more detailed explanation of what --

Not more detailed [laughs].

No [laughs].

No, I mean, no, there’s no shortage of detail here.

But it’s the explanation that’s lacking. What do these mean?

Yes, I mean a set of numbers occupying that much of a page to a layman means nothing. But the findings are summarised. So I suppose to be fair, this simply backs up some very simple statements. Left atrium, “The left atrium is mildly dilated.” Well, that’s a statement. I don’t know whether that’s good or bad. Presumably one shouldn’t have too much dilation, otherwise nothing gets through [laughs]. But, “The aortic valve blah, blah, blah appears structurally normal.” Yes, I mean there’s some information here which I suppose if I got onto Google I might be able to find out more about what it meant. So I’m not short of information. And there is a conclusion, “The EF”, whatever that is, “is at the lower end of normal range.” That sounds promising [laughs].

Does that make you think maybe something, some sort of paragraph to help you interpret that would have been helpful?

I think so. I mean, the findings are stated in some detail. There is a conclusion. But I guess you’re right. I think… I think the difficulty must be that if you simplify something or oversimplify it, you can either - you can mislead. I mean this is a - for those in the know - this is a very precise document. For the layman, it’s not particularly helpful. But I suppose the thing is it, it’s much better to be talking with somebody than to have a letter. If you have a letter saying, “We are very concerned about this condition, blah, blah, blah” then, you know, you’re likely to worry and you immediately want to talk with somebody. So I suppose there is a limit to how much, how much simpler you could offer a conclusion.

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Age at interview:

68

Sex:

Male

Background:

Cathy and Fraser are married with two grown-up children. Fraser is a retired scientist and Cathy is a retired teacher. Ethnic background/nationality' White British.

Fraser' I can guess from a layman’s point of view what it means. But I have no idea whatsoever. I haven’t looked at that yet. I shall go and Google it later.

Cathy' I was going to say, one will Google it, yes. If I could have remembered what it was called I would have Googled it yesterday, because I was thinking about it yesterday. But I might not have understood what it said anyway, but it would have, there would have been bits of it that I could.

Fraser' My guess is that one of the valves is not closing properly and there is a bit of reflux.

Would you have liked more information to be given to you at the time, when this result was given to you?

Cathy' I think some literature would have been helpful, so that I could go away and read it in my own time and discuss it with Fraser, since he was having the same thing as well, and get more out of it probably, more understanding out of it, I should say. But I sort of felt, “Well, there’s going to be an opportunity to talk about it with somebody anyway.” So I wasn’t too worried. I just prefer to be well primed really, I think. And then I can forget [laughs].

So at the moment you don’t know whether this is something that might need treatment, whether that’s tablets or surgery or anything?

Cathy' No, I don’t know that, yes. So I’m, the mind’s in limbo there. It won’t start to click in until I discover what I need to worry about [laughs]. So yes.

I know talking to some people who’ve been through the screening programme that you get told at the appointment if they can see something. But then they also send a, a sheet of results. Have you had a written sheet through?

Cathy' I don’t recall seeing anything written at all since my appointment, really.

Fraser' No, no. I’m trying to remember why we know, or why I can remember that you have mild aortic regurgitation.

Cathy has memory loss, so having something written to take away with her would have been particularly helpful. For her, even remembering the name of the condition so she could look it up on the internet was difficult. Although she and Fraser did not at first remember getting the results letter, they found they had kept it in a file, but it still did not mean a great deal to them when they read it again. Fraser noted that it said Cathy had ‘mild aortic regurgitation, whatever that is’, and his own results said ‘normal echo study, no valvular pathology, normal right heart, no pericardial effusion, normal study.’ But as Fraser added, ‘That’s an issue with any specialism, whether it’s people mending your car or people providing medical treatment. And because it’s so specialised there are a lot of abbreviations around. And I’m afraid me being me, I tend to sort of make a note of them and then come back and immediately look on the Internet….. And because the medical profession is always under pressure, you know, is there always enough time to explain to people exactly what they mean when they talk about this or that in terms of initials and acronyms?’

Many of the interviews took place when the screening research study was in its very early stages. At this point arrangements for follow up appointments were still being put in place, so people with a diagnosis had to wait a few months before they got another appointment at which they could find out more (see ‘Attending follow up appointments’). This has since been resolved but at the time probably added to some people’s uncertainty.

As a result of this early feedback from participants, changes have been made: firstly, the research team have developed a written leaflet to give people on the day if they are told they have mild heart valve disease, explaining more about the condition and reassuring them that they do not need to worry. The patient letters that are sent out to people to confirm their results have been rewritten with an easy-to-read lay summary. A results letter is also sent to the patients’s GP with any recommendations or advice as necessary.